Saturday, June 16, 2012

Never Surrender: Donating a Kidney

In honor of Elana Johnson's new book, SURRENDER, I have joined the "Never Surrender" blogfest. Here's my never surrender story.

Six years ago, my older brother's kidneys failed. This wasn't the first time. When Matt was a teenager, my dad donated a kidney to him. But "foreign" kidneys only last so long. Because my brother ultimately rejected my dad's kidney, that meant at least half of my siblings (ten in total) wouldn't be able to donate to him this time around; they had the same antigen as my dad that Matt's body would also reject.

I wanted more than anything to donate my kidney to my brother, and so I got tested and--hallelujah--I was a perfect match! With blood and tissue type, we were like twins. I kept advancing through the succeeding tests (there are a bazillion) to make sure everything was inline to donate. Matt and I started planning possible surgery dates and dreaming of a life for him with no more dialysis. Then one day the nurse coordinator called me and said the surgeons ruled me out for donation. Here's why: I had all these extra forking arteries coming out of my kidneys. They couldn't be spliced into Matt's "plumbing system" because they were too tiny. I tried coming up with any exception (my dad also had extra arteries when he donated years ago), but nothing I said mattered. The answer was no. I couldn't donate to Matt.

I was so confused, so torn-up inside. I knew I was supposed to do this. I've never cried so hard in my life. I locked myself in a room and sobbed and wailed through a whole box of tissues AND my sleeves AND all my children's blankets. All I wanted to do was help my brother and I couldn't.

To make matters worse, my brother turned down a kidney from a girl who died in a car accident just the day before the surgeons told me NO. Matt could have had a kidney, but he was waiting for mine--the "perfect match." I felt horrible.

For the next three years Matt's health declined. While dealing with the continued drudgery of dialysis, he contracted a life-threatening case of West Nile Virus, which gave him seizures that sent him to the emergency room often. Several times he almost died. On top of that, cancer was discovered on his failing kidney, and it had to be completely removed. And there were still no matching donors. The rest of my siblings tried and were ruled out, along with several friends and acquaintances. Some had the antigens he'd reject. Some weren't in good enough health. Matt began to despair. He said he would sit and look outside his living room window. He'd watch the people in his neighborhood walk outside and get the mail from their mailboxes. He wished so badly to have the strength to do that. He wanted to tell them how lucky they were.

One day when Matt had another close call and ended up in the hospital, I'd had enough. I drove up to Salt Lake City and marched into the kidney clinic, where I waited for two hours until someone would talk to me. I demanded that they take my kidney NOW and give it to Matt. I was his perfect match! Why couldn't they use their brilliant surgeon skills and make this work? They told me no. Again.

I decided to forget them and figure out how to donate to Matt somewhere else. My oldest brother and I researched a facility out east that looked promising. When I called the hospital in Salt Lake City and asked them to transfer my x-rays and test results, the nurse coordinator said, "Whoa, now, wait a minute. Let's rethink doing this here." A few days later, the surgeons had a big meeting and one of them--to the dismay of the others--stepped up and said, "I can do this."

With Matt before the transplant
So three years ago--on my wedding anniversary, and when my third child was only nine-months-old, and a week before my husband graduated college--I finally got to donate my kidney to Matt. I was giving something life-saving to someone I loved who couldn't obtain it for himself. I'm not special because I chose to donate (so many people wanted to), or that I did. But I am blessed by that experience a thousand times over. It was the most wonderful and painful and awful and beautiful and defining thing I've done. It's what ultimately inspired me to write The Rowaness of Shalott. Because, in the end, fiction was the best way for me to describe what I felt and what I don't know how to adequately explain in any other way.

I'm grateful Matt is now living a full life. I'm grateful he can run around with his three little girls and work a demanding and fulfilling job. That he can walk to his mailbox and get the mail again. I'm grateful I never surrendered.

16 comments:

  1. What a beautiful inspiring story of love! Thank you for sharing it.

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  2. That's a beautiful story! And so fitting to the theme of 'never surrender'. :)

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    1. Thanks, Laura! I'm glad I finally wrote it down.

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  3. I love how your never surrender story is tied into your writing. Very inspirational. So proud of you, Katie.

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    1. Thank you, Ilima. (You are the one I find inspirational.)

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  4. This is a fantastic story. I may or may not have teared up a little... What a great never surrender moment! I'm so glad you were able to help your brother this way.

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    1. Thank you, Elana! This means so much coming from you. Also, I read your blog post about gratitude today, and all I have to say is, thank you and you're welcome. :-)

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  5. Wow! What a beautiful story! I'm so glad you never surrendered. Love this post!

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    1. Thanks, Jenn! I'm glad you never surrendered too. :-)

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  6. Wow, that's amazing Katie. I'm so glad you were able to save your brother and that you never gave up!! What an incredible example. thank you for sharing!

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    1. Thank you, Sara! It was a scary for me to write this blog post. (I never have until now.) I just feel like I can't do justice to explaining everything my brother suffered or how I felt finally being able to donate the kidney to him. So I'm happy you liked it. :-)

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  7. Oh my goodness Kathryn! That was so beautiful. You had me in tears. I lost my little sister to a heart defect and I remember feeling the way you described. If there would have been anything in the world I could have done, I would have. I'm so happy you didn't give up!

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    1. Wow, Deana, I didn't know that about you and your sister. It's heart-wrenching when someone you love is suffering and you feel helpless. I'm sure your little sis would be so proud of you now. I wish you all the best with your newly agented novel!

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  9. Thanks Katie for sharing this beautiful story. I'm so grateful it all worked out.

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